Incurable breast cancer numbers far exceed previous estimates. World first data

NSW leads the world in methodology that could reframe cancer care.

After 25 years of advocacy by Breast Cancer Network Australia (BCNA), people with metastatic breast cancer (MBC) are now counted - at least in New South Wales.

In a breakthrough that far surpasses previous estimates, the Cancer Institute New South Wales has identified 7,900 people (7,850 women and 50 men) living with MBC in NSW alone.

Metastatic breast cancer is treatable not curable; the verified data means the national approximate of 10,553 people is wildly inaccurate.

BCNA is calling on the National Cancer Data Alliance, launched in January by Prime Minister Albanese, to support other states and territories and ensure they can adopt the NSW methodology. Only then will the true number of people living with MBC in Australia be known.

The timing is crucial, as advancements in treatment mean people are living longer with MBC: it is vital to understand how to support them.

In August 2023, BCNA led a roundtable that set Cancer Institute NSW on the path to the discovery that could reframe cancer care in Australia.

Leading global experts with The Lancet Breast Cancer Commission expect the breakthrough to inspire global change.

Cancer Institute NSW developed the method by leveraging existing cancer registry data, integrating it with hospital and clinical treatment data, the Pharmaceutical Benefits Scheme (PBS), and the Medicare Benefits Schedule (MBS).

The critical data is ongoing and delivered in real time, allowing government policymakers to make informed and meaningful changes in correcting the significant unmet needs of people with life-limiting breast cancer.

This breakthrough also paves the way for other cancers to be counted, as NSW works to extend this model beyond breast cancer, offering a blueprint for national and international action.

"NSW is setting an Australian and global benchmark. We can't stop now - we are so close. This deserves national priority - we urge all state governments and territories to make a commitment like NSW to close the data gap," says Vicki Durston, BCNA Director of Policy, Advocacy & Support Services.

“This achievement is the culmination of BCNA’s 25-year commitment to making people with metastatic breast cancer count. At BCNA’s National Roundtable in August 2023, Cancer Institute NSW committed to solving the data gap for MBC. It has delivered a model that will pave the way for other cancers to be counted and for other states to follow.

“This milestone reflects the power of advocacy driven by the voices of people living with metastatic breast cancer. Our Consumer Representatives have played a pivotal role in shaping this outcome by sharing their lived experiences and ensuring that the challenges faced by those with advanced cancer remain front and centre, Vicki added.

Dr Belinda Kiely is a NSW Medical Oncologist and global expert working with The Lancet Breast Cancer Commission.

“The announcement today is vitally important for government, breast cancer clinicians and researchers, and patients, who finally feel recognised," she says. 

"As a breast cancer medical oncologist working in NSW this information will help me understand how many people are living in NSW with metastatic breast cancer, how well they are living, and how long they are living. It will help us understand how well our treatments are working and will be useful to guide future research.

“As part of the BCNA network as well as the global advanced breast cancer alliance and contributor to the Lancet Commission on breast cancer, I understand the global importance of this information. Unfortunately, we have not yet cured breast cancer, and more work needs to be done to improve the lives of people living with metastatic breast cancer.

"I know my colleagues around Australia and globally would also benefit from access to information like this, so I hope the methods NSW have developed are rolled out nationally and globally.

“People living with metastatic breast cancer and their clinicians have been calling for this information for years. BCNA has listened to what people with metastatic breast cancer want and I am so happy that finally our patients will be visible, and their needs better addressed.”

A joint media release is also available from the NSW Minister for Health and NSW Minister for Women: 
NSW first in the world to identify number of people living with metastatic breast cancer